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RareShare Reaches Out

Last updated 27 Feb 2018, 03:03 PM

In September and October, Rare Genomics Institute participated in the Global Genes Patient Advocacy Summit in Irvine, CA and the National Organization for Rare Disorders (NORD) conference in Washington, DC.  At both meetings, Rare Genomics was there to spread the word about RareShare and its ability to connect those with interests in specific rare diseases, as well as to learn about the latest rare disease developments from leading experts.

It was generally acknowledged that research is critical in developing new therapies. Attendees gained insights on the development of grant programs to fund rare disease research and received advice from the EveryLife Foundation on approaching government representatives increased National Institutes of Health (NIH) support.  The NIH is the largest health research funding agency in the US, and includes programs focused on rare diseases.

The promise of Next Generation Sequencing, a powerful tool that can aid in the rapid and less costly diagnosis of rare disorders, was also discussed. Ryan Taft, the Senior Director of Scientific Research at Illumina, indicated that as of November 2017, there will be a significant increase in insurance coverage for these tests.

Looking toward the future, various companies are currently developing exciting new therapies for rare diseases. In the area of digital health, the application of advances in computer sciences to healthcare delivery can improve how clinical trials are  conducted.  These technologies could reduce current clinical trial timelines by making recruitment more efficient and allowing better followup of patients’ responses to the treatment under study.  Such transformative changes make this an exciting and hopeful time for rare disease communities.

RareShare and Rare Genomics work with and partner with many other organizations that serve the rare disease community and will continue to update our communities about the newest concepts and concerns that affect everyone in the rare disease world.